Dominic Wilkinson @NeonatalEthics
In the news this morning, the NHS has released data on individual surgeons’ performance, so called “surgeon report cards”. This represents the latest move towards increased transparency and accountability in the National Health Service. Elsewhere in the media today, there are numerous reports of the UK couple who were apparently charged £100 after posting a negative hotel review on an online website.
These parallel stories highlight one concern about certain types of health accountability: sensitivity to the negative impact of reviews (or poor performance figures) could lead to harmful changes in behaviour. For surgeon report cards, one frequently cited concern is that publishing report cards could lead surgeons to avoid high-risk cases. If surgeons choose patients with lower risk of dying, they will potentially end up with a better report card. However, then the results would be misleading (it would be the equivalent of someone getting a higher mark by choosing to sit an easier test). More worrying, it may mean that some high-risk patients are unable to access surgery.
Should we be worried about the negative effect of report cards on surgeons behaviour? Continue reading
Guest Post: Charles Camosy, Associate Professor of Christian Ethics at Fordham University, New York City
E-mail: email@example.com Twitter: @nohiddenmagenta
The discipline of theological bioethics is in trouble.
Especially as theology continues to morph into religious studies in many university departments, “social ethics” now swallows everything in its path—with almost all questions of ethics becoming questions exclusively about history, sociology and/or economics. Furthermore, especially in the Roman Catholic world, academic and ecclesial politics push against academics working on issues like abortion, euthanasia, health care distribution, and artificial reproductive technologies. After all, regardless of the position one takes on these issues, it is bound to run afoul of one of two orthodoxies: that of the Church or that the secular academy. Especially if not yet established in one’s academic career, it can be dangerous to be branded a heretic by one of these power brokers. Unsurprisingly, good universities are struggling even to find marginally viable candidates for excellent bioethics jobs. Most theological ethicists have decided not to write on bioethics.
But there is another reason that theological bioethics is in trouble. Today’s centers of power in academic and clinical bioethics (at least in the developed West) generally don’t take theology seriously. I recently attended the annual meeting of the American Society of Bioethics and Humanities and was dismayed—though, I must say, not surprised—to see that a grand total of zero papers had an explicitly theological argument. Those of us who do theological bioethics know that, in order to get a paper accepted by today’s ASBH, one is forced to hide or translate one’s theological commitments. The reason I was able to present this year was because I was invited by the Christian theology interest group—the one place at ASBH (during the evening, apart from the formal sessions) where theologians can actually present and discuss theology.
The first advert for the sale of a clinical trial place offers, for $2 million, the chance to participate as a patient in a trial investigating the Farmington virus (FARV) and its potential efficacy in treating certain forms of brain tumours. Meanwhile, Alexander Masters has written convincingly about his idea for a clinical trial dating agency: matching wealthy but sick donors with scientists who have an idea for a cure but no money for a trial (shorter version also available). In Masters’ idea as in the real life case, the proposal is that the wealthy donor will pay not just for himself or herself, but enough for the trial to go ahead with a full complement of those who could not otherwise afford it, recruited on the same basis as any trial.
Predictably, ethical concerns have been raised, perhaps the main one being equality: “In the UK, the principles in participating in clinical trials include open and equal access for those who chose to participate” (Kate Law, director of clinical and population research at Cancer Research UK, quoted in The Telegraph ).
Reproductive technologies were in the headlines when Facebook and Apple announced they would offer female employees a $20,000 benefit to freeze their eggs. According to the report, this enables women to delay child bearing for different reasons and gives women more control. The announcement states that egg freezing is a pricey but increasingly popular option for women: The procedure typically costs up to $10,000, with an additional $500 for storage each year. After freezing eggs, in vitro fertilisation (IVF) can be used afterwards.
I wish to start with a disclaimer: I’m totally for increasing control and flexibility with reproductive technologies, I think the possibility as such is great, I cheer if some women genuinely wish to use this option, and I totally recognize that Facebook and Apple are just giving an option. However, there is room for questions. First, individual-level solutions are suggested where the actual issue is likely to be socially constructed, and secondly, IVF is seen merely as a handy option. These two are discussed in the following. Continue reading
The first patient to be diagnosed with Ebola outside of West Africa has been reported. He is now in the US, receiving treatment. He arrived from Liberia via Brussels before reporting symptoms, which were initially mis-diagnosed and treated with antibiotics.
If I were in West Africa and I had reason to fear I had been exposed to Ebola, do you know what I would do, if I had the resources? I would not wait to see if symptoms appeared or to be diagnosed, I would fly to the US or Europe, where, if symptoms developed, I would receive the very best health care in the world, including experimental treatments, in front of the world’s media.
If I could afford it, even selling everything, I would get on that plane to freedom, or at least a chance. A better chance to live.
But of course along the way, I would expose others to the risk of infection, and I would risk introducing the infection to areas of the world that are currently Ebola-free. It is unlikely, even so, that it would reach the levels seen in West Africa, as these countries have the resources and infrastructure to implement more effective containment strategies. Nevertheless, there is a chance that some people would die.
So how much freedom should people have? Should our freedom to travel be balanced against the risks it might pose to others?
In an article soon to be published in the Journal of Medical Ethics, Rob Sparrow imagines a procedure via which multiple generations of human embryos might be created in the laboratory. Egg and sperm cells would first be generated from existing or new human pluripotent stem cell lines. The resulting eggs would be fertilised using the sperm to create zygotes and ultimately embryos. Embryonic stem cells would then be harvested from these embryos and used to create new egg and sperm cells, which would in turn be used to fertilise one another to create further embryos. This process could be iterated, in principle indefinitely.
Let’s call this procedure ‘iterated in vitro reproduction’ (Sparrow calls it ‘in vitro eugenics’). Iterated in vitro reproduction is not yet possible, but, citing recent developments in the science of stem cell-derived gametes, Sparrow argues that it may well become so, though he acknowledges are number of significant hurdles to its development. He also discusses a number of possible applications of the technology and calls for an ethical debate on these. The most controversial application would be in the creation of designer children. Consider the following case, which is a variant on one of the scenarios imagined by Sparrow:
Jack and Jill present to a fertility clinic. Jack provides a sperm sample, and fertility doctors harvest a number of eggs from Jill. These eggs are fertilized with Jack’s sperm to create embryos, from which embryonic stem cells are derived. These stem cells are then induced to develop into eggs or sperm which are used to fertilise one another, and so on. The process is iterated numerous times, and at each stage, the embryos are genetically screened via pre-implantation genetic diagnosis. This screening is used to inform a process of selective crossing, so that, over several generations, the population of embryos evolves towards certain genetic dispositions desired by Jack and Jill (a disposition towards longevity, say). This process is aided by adding small amounts of genetic material from stem cell lines derived from other individuals. Eventually, doctors identify an embryo with almost exactly the desired combination of genes, and this embryo is implanted into Jill’s womb and carried to term. A child, Jarvis, is born.
Cases like this raise numerous ethical issues, some of which are discussed by Sparrow and the seven commentators on his paper. However, they also raise an interesting conceptual question: would the users of such a technology be the genetic parents of the resulting offspring? Would Jack and Jill be the genetic parents of Jarvis?
Frank Van Den Bleeken wants to die. He is not physically ill, but claims to be suffering from persistent mental anguish, from which death will provide him with some release. And as a Belgian man, living in Belgium, we might ordinarily expect him to be able to take advantage of that country’s fairly liberal euthanasia laws. Whereas many of the assisted dying regimes around the world specify that the person who wants to die must be terminally ill to qualify, Belgium has seen several cases in which people have been helped to die for reasons that do boil down to psychological distress: in a couple of fairly well-reported cases, Marc and Eddy Verbessem were deaf twins who feared blindness and sought death on that basis, and Nathan Verhelst sought it in the wake of unsuccessful gender-reassignment surgery.
What makes Van Den Bleeken particularly newsworthy is this: he is a convicted killer and rapist. According to the CBC, he had argued that “he had no prospect of release since he could not overcome his violent sexual impulses and so he wanted to exercise his right to medically assisted suicide in order to end years of mental anguish”. It’s not clear whether the anguish came from being in prison, or guilt, or something else. This might make a difference; I’ll touch on that below.
What should we say about the morality of such a case? Continue reading
It’s still summery, and so here is a little story for the beach or the side of the pool
‘There are challenges, certainly’, said the Boss. ‘But we’re confident that we can meet them. Or at least’, he went on, looking over his glasses for signs of dissent, ‘for a critical mass of stakeholders’.
A graph appeared on the screen at his side. He traced its lines with a red laser dot.
‘Here’, he said, ‘we have the expected rise of temperature with time. And here’ (he stabbed with the dot, as if doing the killing himself), ‘we have the consequent reduction in human population – assuming’ (and he held up a schoolmasterly finger), ‘we don’t have any HR66.’
He sipped some water, and waited for this to sink in. It did.
‘But don’t worry’, he said. ‘There’s good news. We do have HR66. Not enough for everyone, sadly, but enough to ensure that the human baton is passed on. And enough, I’m glad to say, for everyone in this room.’
There was a ripple of relief.
‘And their families, of course’, the Boss continued. ‘Families are very important to us. But all this assumes that you want to have the HR66. No one will make you. But, frankly, what’s not to like? You take a single dose, and you survive. If you don’t take it, you don’t survive. It’s as simple as that. It even tastes of candy floss. It has only one side-effect, and that’s a wholly good thing. It increases – increases, mark you – your IQ. Very, very significantly. By about 100 points, in fact. Not only will you be alive; you’ll be a genius beside whom Einstein would have seemed a hopeless retard.’
One more press of the button, and up flashed the logo of the corporation that manufactured HR66. The Boss didn’t think it relevant to mention his shareholding.
‘Naturally’, said the Boss, ‘we have to vote for this in the usual way. Yes, humanity’s facing apocalypse, and there’s one, and only one way out. But we’ve still got to do things properly. But I expect that we can move to a vote now, can’t we?’
‘I’m sure we can’, agreed the Deputy. ‘You’ve all seen the motion. All those in favour….’
The Boss and the Deputy, up on the podium, stared. Everyone else turned. A little man in tweed lisped through a badger’s beard. ‘I’d like some clarification, please.’
‘But of course, Tom’, said the Boss, magnanimous and desperately alarmed. ‘Anything you like.’
No one really knew how Tom had got into the government, or why he wanted to be there. He had no strategically significant connections, no dress sense, no publications other than some monographs on moths and mediaeval fonts, no assets other than a dumpy wife, some anarchic, unwashed children and a small cottage on Dartmoor, and no entries in the Register of Members’ Interests apart from ‘Masturbation’. This entry had caused a terrible storm. He’d been accused of injuring the dignity of the House, but, after expensive legal advice had been taken, it had been ‘reluctantly concluded’ that there was no power to force him to remove it.
‘I’d like to know’, said Tom, ‘who’s going to get the drug. And why them rather than anyone else.’ Continue reading
The World Health Organization on Monday announced the outcome of its ethical deliberations. It found that, in certain circumstances, it was ethically permissible to use unproven drugs on Ebola patients.
It then listed ethical criteria. These included transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community.
These are laudable principles but what do they actually mean in practice? The devil is in the detail. If you broke your ankle after slipping on coffee in a hotel, and asked a lawyer if you would win a case against the hotel, you would be frustrated if the lawyer simply recited a legal principle: “the hotel owes you a duty to take reasonable care to see that you are reasonably safe in using the premises”. You want to know whether, in your case, the hotel did take reasonable care. To resolve your problem, the legal principle must be applied to the facts.
Summary: Patients potentially infected with Ebola have the right to experimental treatment outside of randomised controlled trials. Consent should be sought while they are competent if it is anticipated that they will lose competency through the disease. In the most extreme emergencies, experimental treatment could be given without consent in the public interest. However, in such extreme emergencies, such if the virus were to mutate to become very highly transmissible, selection of patients for such trials should be on a principle of justice. This would generally require selecting patients with the worst prognosis as initial subjects. Whilst the current outbreak has been declared an international health emergency, it does not warrant over-riding standard ethical principles of consent and autonomy.
WHO are convening a meeting next week to discuss the use of untested treatments for the current Ebola outbreak, which it has declared to be an international public health emergency.
Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization explained “We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,”
With a fatality rate of recent outbreaks at around 50%, and current treatments consisting of little more than rehydration, it is easy to see why this experimental approach is an attractive option. Jeremy Farrar, David Heymann and Peter Piot argued convincingly in favour of such measures.
However, there are a number of diseases which meet Dr. Kieny’s criteria of “a high fatality rate without any proven treatment or vaccine”. While Kieny is referring to infectious disease, sufferers of other diseases have campaigned for many years for access to untested medicines. Along with several colleagues, I wrote a paper on this subject with Les Halpin, who recently died from motor neurone disease, having campaigned for access to medicines for many years
The case for
I have argued that, when a patient is facing a certain death from an incurable disease, the relative safety that randomised controlled trials provide is unnecessary- especially when the payoff is a placebo group of patients who receive no benefit at all.
One common reason in support of randomised controlled trials is safety. This is true for most patients: patients for whom there are other good treatment options, or whose disease is not itself life-threatening. But for some patients, this concern is a cruel irony. Their disease is so overwhelmingly unsafe that any risk is outweighed by potential benefits. Udo Schuklenk reports Martin Delaney, a trial patient for AIDS who described the situation vividly:
It is as if I am in a disabled airplane, speeding downward out of control. I see a parachute hanging on the cabin wall, one small moment of hope. I try to strap it on, when a would be government employee reaches out and tears it off my back, admonishing, ‘You cannot use that! It does not have a Federal Aviation Administration sticker on it. We do not know if it will work’